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HUMPTY-DUMPTY SYNDROME


HUMPTY-DUMPTY SYNDROME

Most all patients with Parkinson!s disease will develop Humpty-Dumpty syndrome. We get it from our doctors. Our doctors get it from our health care system. It may have a silly name, but

it!s a serious condition.Those of us with Parkinson's disease know how many medical problems come with the dis-

ease.

There are the obvious, visible ones that make our movement abnormal, like tremor, rigidity, slow movement and postural instability.

There are problems with functions that should happen automatically, but now don!t, like: blink- ing, smelling, walking, balancing, swallowing, digesting, eliminating, sleeping, and regulating blood pressure.

There are problems that come from side effects and interactions of medications we take fo treat these symptoms. Often the side efffects are the same as the symptoms they treat, like: nausea, tremor, shaking, loss of coordination, dizziness, confusion, hallucinations, and Sero- tonin syndrome, which, in severe cases can cause coma or death.

When you have this many problems, you see a whole lot of specialists. Like Humpty Dumpty, we get broken into pieces, each farmed out to different specialists.

ALL the King's horses and ALL the kings men at least TRIED to put Humpty back together again. No one is putting our pieces back together.

The job of putting us back to together again usually rests on our shoulders. Most of us are not qualified for the job. We may not be trained in medicine. If our specialists don't talk to each other, we have to pass the messages along to them.

People with Parkinson!s make very poor messengers, having problems with memory, cognition, speech and communication.

Short of a change in the health care delivery system to a holistic and preventive model of care, the only way to treat the symptoms of Humpty-Dumpty syndrome is to practice relentless self advocacy — first in finding a doctor who will oversee your care, who will work together with you as a team and responds quickly to your calls when you are falling apart.

Find out if there is a Care Manager for Parkinson's patients available to you through your health insurer or your clinic. Some may be available through private pay.

Keep looking for answers and solutions. When you hit a dead end, back up and take another pathway.

Lastly and most importantly, talk to other patients, because until there!s a cure, there!s a community.

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